[Data, Data, Data: Sharing and Owning Data to Game Change Rare Disease Research][1] from [Global Genes][2]. [1]: https://www.youtube.com/watch?v=7Vfj3Q_wBLM [2]: https://www.youtube.com/channel/UC3kGR-FsXTEbtGj1Ljg4CxA
Patient organizations play a critical role in leveraging their communities’ data to drive innovation and access to therapies. Learn how you can develop the capacity at your own organization for improved data collection and governance. Explore methodologies for data collection and registry models, and start acceleratin…
View [Building Valuable Registries and Natural History Studies on Youtube ][1] [1]: https://www.youtube.com/watch?v=grE5JAF4HQM&feature=youtu.be
It’s well known that data sharing and collaboration when advancing rare disease research is beneficial to all. TJ Sharpe and Jenn McNary discuss how patient populations, organizations, and industry members can better create an environment of transparency.
_**Please join us for our**_ 3rd Annual “RARE Patient Advocacy Summit_”_ held on **September 11-12, 2014** at the Hyatt Regency in Huntington Beach, California. _**Empowering Patient Advocates to Become Successful ****Activists**_ [Download Agenda][1][ (PDF) ][2][Download Speaker Bios][3] (PDF) Download PDF slides: [D…
It’s well known that data sharing and collaboration when advancing rare disease research is beneficial to all. TJ Sharpe and Jenn McNary discuss how patient populations, organizations, and industry members can better create an environment of transparency.